Introduction: African American women are 5 times less likely than white women to meet at least 5 or more ideal cardiovascular health metrics as defined by the American Heart Association Life’s Simple 7 (LS7) components (smoking, diet, physical activity, BMI, blood pressure, total cholesterol, and glucose). There are few studies probing the influence of sociocultural factors, such as body image dissatisfaction (BID), on these disparities. A better understanding of the impact of BID on cardiovascular health could assist in the design of more effective behavior change interventions for African American women. Hypothesis: We hypothesized that BID would have a negative association with cardiovascular health in overweight and obese African American women. Methods: We enrolled 32 women (mean age 49 years [SD 12.9]), from 5 predominantly African American churches participating in a larger community-based participatory study (FAITH! App Pilot Study) of a mobile health lifestyle intervention among African American women and men. We conducted a cross-sectional analysis of baseline data to evaluate the association between BID and both cardiovascular health and select psychosocial factors (e.g. motivation for healthy eating, diet self-regulation). A LS7 composite score was calculated as a measure of overall cardiovascular health (range 0-14). The Pulvers scale, consisting of images of women across the BMI spectrum, was used to measure perceived current and goal body size (rating of figures, 1-9; underweight to very obese). A BID score was calculated as the difference between perceived current and desired body image (range -8-8; BID < 0 [desire to be heavier], BID > 0 [desire to be thinner], BID = 0 [no dissatisfaction]). The BID score range for our cohort was 0-4. Thus, we categorized BID as no/low BID (BID score 0-1) or high BID (BID score 2-4). Results: Twenty-two percent (7/32) of women were overweight (BMI 25-29.9) and 78% (25/32) were obese (BMI (≥ 30). Forty-four percent (14/32) had no/low BID and 56% (18/32) had high BID. Those with high BID were more likely to be obese as compared to no/low BID (94% (17/18) versus 57% (8/14), p=0.03). Although not statistically significant, the mean LS7 composite score was 1 point higher among those with no/low BID, versus high BID (8.83 versus 7.76, p=0.25). Compared to women with high BID, those with no/low BID were more likely to have greater: intrinsic motivation (P=0.01) and integrated regulation for healthy eating (P=0.007), and self-regulation to reduce fat and caloric intake (P=0.01). Conclusion: Ultimately, although small, our study suggests that African-American women with obesity are more likely to have high BID. High BID was associated with lower motivation and self-regulation, which predict cardiovascular health. BID and other psychosocial factors for behavior change are potential targets for culturally-tailored lifestyle interventions in this group.
Research participation provides adolescents and parents a launching pad for conversations
Little is known about whether adolescent participation in sexual health research prompts adolescents and parents to have conversations about sensitive topics. One year after being presented with a hypothetical microbicide safety study, 248 adolescent–parent dyads were asked about conversations they may have had after their initial study visit. Sixty-three per cent of adolescents and 82% of parents reported having a conversation about the study. A launching conversation about broader topics (e.g. risk behaviours) was reported by 8% of adolescents and 17% of parents. Because there is evidence that conversations are occurring, researchers could provide guidance to help facilitate potentially sensitive discussions.
Trends Over Time in Pap and Pap-HPV Cotesting for Cervical Cancer Screening
Background: In 2012, updated cervical cancer screening recommendations were released with consensus on Papanicolaou (Pap) testing every 3 years for women age 21–65 years or Pap–human papillomavirus (HPV) cotesting at 5-year intervals for women age 30–65 years. Primary study aims: Assess current use of Pap-HPV cotesting and describe local population trends over time in Pap and Pap-HPV cotesting. Secondary aim: Assess sociodemographic factors correlating with screening. Methods: We assessed Rochester Epidemiology Project data for Pap and Pap-HPV cotesting among women age 16 years and older living in Olmsted County, Minnesota, yearly from 2005 (study population n = 47,203) through 2016 (study population n = 49,510). We calculated 3-year (Pap) and 5-year (Pap-HPV) moving prevalence rates of screening as proportion of eligible population. Multivariable logistic regression was used to assess factors potentially associated with screening. Results: In 2016, 64.6% of 27,418 eligible 30- to 65-year-old women were up to date with cervical cancer screening; 60.8% had received Pap-HPV cotest screening. Significant declines in Pap completion rates over time were observed in all age groups, including an unexpected decline in 21- to 29-year-old women. Coincident with decreasing Pap screening rates, Pap-HPV cotesting significantly increased among women age 30–65 years, from 10.0% in 2007 to 60.8% in 2016. Conclusions: This suggests increasing adoption of 2012 screening recommendations in the 30- to 65-year-old population. However, decline in Pap screening among 21- to 29-year-old women is concerning. Disparities by race, ethnicity, smoking status, and comorbidity level were observed. Results suggest need for multilevel patient and clinician interventions to increase cervical cancer screening adherence.
Androgen Mediation—and Antiandrogens Mitigation—of the Epidermal Growth Factor Receptor (EGFR) Inhibitor–Induced Rash: Results From a Pilot Randomized Trial and Small Translational Case Series
Background: Although 50% to 90% of patients who receive epidermal growth factor receptor (EGFR) inhibitors develop a rash, options for rash prevention or palliation remain limited. This issue is particularly important from a palliative care standpoint because these agents are prescribed only to patients with incurable cancer. Here, we report (1) gene expression profiling of skin biopsies from patients with an EGFR inhibitor–induced rash and (2) a randomized, placebo-controlled feasibility trial with the antiandrogen, spironolactone. Both investigations were undertaken to begin to explore the hypothesis that androgens mediate EGFR inhibitor–induced rash and that antiandrogens palliate it. Methods/Results: First, 4 skin biopsies from patients with EGFR inhibitor–induced rash (3 men and 1 woman) were subject to gene expression microarray profiling. A public data set of normal skin gene expression (Gene Expression Omnibus, GSE22998) served as a reference. Sixty percent of commonly interrogated androgen receptor genes (207 of 308 between the 2 data sets) were differentially expressed ( P < .05) in the rash samples. Second, in a 17-patient double-blinded, placebo-controlled trial with topical spironolactone applied to the face, although the primary feasibility end point was not achieved, patients in the spironolactone arm received more doses of EGFR inhibitor, and anecdotal photographic evidence suggested salutatory effects of spironolactone on rash. Conclusions: Epidermal growth factor receptor inhibitor–induced rash appears to be androgen-mediated; antiandrogen therapy merits further study for rash prevention/palliation.
Teaching Health-Care Providers to Query Patients With Cancer About Sexual and Gender Minority (SGM) Status and Sexual Health
End of life is difficult for all patients but sexual and gender minorities (SGM) are prone to isolation and loneliness, especially if their SGM status is unknown or unaccepted. In oncology clinics, where goals of care discussions about end of life are integral and frequent, querying patients about their SGM status and sexual health is of particular importance. The American Society of Clinical Oncology recently released a position statement that called for greater focus on SGM populations with the goal of reducing and eventually eliminating disparities in cancer care within this group. An important first step in addressing such disparities is learning how best to train cancer health-care providers to ask patients about their SGM status and about sexual health in general. This article summarizes the mandate for understanding cancer issues in SGM populations and the dearth of cancer-related data within this group. This article also describes an ongoing 3-part study intended to build a mini curriculum with the goal of helping cancer health-care providers to ask patients with cancer about SGM status and to ask all patients with cancer about sexual health issues. The results of this ongoing study could potentially improve end-of-life care for subgroups of patients.
Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences
Should pretest genetic counselling be required for patients pursuing genomic sequencing? Results from a survey of participants in a large genomic implementation study
Purpose We assessed the decision-making of individuals pursuing genomic sequencing without a requirement for pretest genetic counselling. We sought to describe the extent to which individuals who decline genetic counselling reported decisional conflict or struggled to make a decision to pursue genomic testing. Methods We administered a 100-item survey to 3037 individuals who consented to the Return of Actionable Variants Empirical study, a genomic medicine implementation study supported by the National Institutes of Health (USA) eMERGE consortium. The primary outcomes of interest were self-reported decisional conflict about the decision to participate in the study and time required to reach a decision. Results We received 2895 completed surveys (response rate=95.3%), and of these respondents 97.8% completed the decisional conflict scale in its entirety. A majority of individuals (63%) had minimal or no decisional conflict about the pursuit of genomic sequencing and were able to reach a decision quickly (78%). Multivariable logistic regression analyses identified several characteristics associated with decisional conflict, including lower education, lower health literacy, lower self-efficacy in coping, lack of prior experience with genetic testing, not discussing study participation with a family member or friend, and being male. Conclusion As genomic sequencing is used more widely, genetic counselling resources may not be sufficient to meet demand. Our results challenge the notion that all individuals need genetic counselling in order to make an informed decision about genomic sequencing.
Adolescents’ and Parents’ Attitudes Toward Adolescent Clinical Trial Participation: Changes Over One Year
Little is known about how adolescents’ and parents’ thoughts about participation in clinical trials change over time. In this study, adolescent (14-17 years)–parent dyads were asked about willingness to participate in a hypothetical reproductive health study. A year later, they were asked how their thoughts about the study had changed. Qualitative responses were coded and analyzed using framework analysis. Thirty-two percent of adolescents and 18% of parents reported changes in thoughts; reasons included general changes in perception, clearer understanding, new knowledge or experiences, increased maturity/age of adolescents, and changes in participants independent of the study. Adolescents and parents may benefit from learning about studies multiple times, and investigators should account for development and new experiences to optimize adolescent research enrollment.
Linking Education to Action: A Program to Increase Research Participation Among African American Women
Background: Underrepresentation of African American women as research participants contributes to health disparities. Contemporary studies have focused on clinical trial (CT) participation; epidemiologic and genetic studies utilizing medical records and/or biological samples have received less attention. In partnership with The Links, Incorporated (The Links), a national service organization of professional African American women, this study sought to examine attitudes regarding chart review (CR) studies, genetic studies/biobanking (GEN), and CTs; develop; and evaluate an online education-to-action program. Methods: In phase 1, focus groups were convened with members of The Links to inform the content and format of the program. Phases 2 and 3 involved designing and evaluating the program, respectively. Results: Thirty-four women across three focus groups shared attitudes and perceptions regarding research and provided guidance for program development. Subsequently, 244 women completed the program (77% response rate), including pre- and post-assessments. Participants indicating that they “definitely” or “probably” (responses combined) intend to participate in research increased from 36.5% to 69.3% (pre/post-program). Agreement with the statement “research in the U.S. is ethical” increased (52.9% to 74.4%) as did factual knowledge regarding each of the study types. There was a decrease in reporting “little or no understanding” of study types (Pre/Post: GEN: 66%/24.9%, CR: 62.9%/18.4%, CTs: 40.7%/15.5%). Pre-program, few were “very positive” about the study types (14.3% GEN, 15.0% CR, 28.6% CTs); post-program ratings increased and equalized (42.8% GEN, 43.0% CR, 42.5% CTs). Conclusions: An online education-to-action program targeting professional African American women improved knowledge, perceptions of ethics, and intent to participate in biomedical research.
Chemotherapy Acute Infusion Reactions: A Qualitative Report of the Perspectives of Patients With Cancer
Objective: A growing number of cancer antineoplastic agents can cause life-threatening acute infusion reactions. Because previous studies have not studied these reactions from the perspective of patients, this study was undertaken with that objective in mind. Methods: Patients who had an acute infusion reaction were interviewed based on the Leventhal model. Once saturation of content was achieved, interviews were transcribed and analyzed with qualitative methodology. Results: Twenty-one patients were enrolled. Most were women (n = 15); the median age was 58 years, and paclitaxel was the most common inciting agent. Three themes emerged. First, these reactions are frightening; patients made remarks such as “I was just thinking oh my God, I am dying.” Second, prior education about these reactions seemed to mitigate this fear, “Basically everything the nurses told me potentially could happen, like happened. So, I was prepared.” Third, when health-care providers were prompt and attentive during the reaction, patients described less fear with future chemotherapy, “So no, I’m really not fearful about going in tomorrow because I know they’ll be there and they’ll be watching me.” Conclusion: These reactions evoke fear which can be mitigated with education prior to and with prompt responsiveness during the acute infusion reaction.